Monday, August 28, 2006

MEET THE AMAZING KENNEDY!


There is a beautiful girl named Kennedy and I would love for you to meet her! Her new website is: http://www.chargesyndrome.info/. She is AMAZING!

Kennedy and Mighty Max have experienced similiar medical complications, i.e. choanal atresia, open heart surgery, hearing loss, inability to eat orally, etc. (Unfortunately Max has the preemie issues /chronic lung disease too! Lucky Max.)

Her list of specialists include:

  • teacher for the blind/visually impaired
  • teacher for the deaf/hard of hearing
  • early interventionist
  • speech pathologist
  • audiologist
  • pediatrician
  • gastroenterologist
  • endocrinologist
  • cardiologist
  • nutritionist
  • neurologist
  • orthoptist
  • ophthalmologist
  • orthopedic surgeon
  • cleft-palate team
  • otolaryngologist
  • physical therapist
  • occupational therapist

In Kennedy's 8 1/2 years of life, she has already experienced 18 surgeries. What a trooper! But despite that and all the sensory/behavior/developmental delay issues typical with CHARGE, this lil' powerhouse is in the Brownies and has attended regular school with support for the past three years. Plus look how adorable and spirited she is in her videos!!!

She does continue to have ongoing medical needs around her secretions, heart, tube feeding, etc, but she has come a long way developmentally. She is considered (and admired as) a "high functioning" CHARGEr. (Many are non-verbal and severely delayed.) Obviously I am HOPING that Max is another "Kennedy" in seven years participating in activities and attending public school....but only time will tell. We are certainly doing all we can to hopefully reach the same goals! :)

Kennedy is a true inspiration to me and soooo many other families with young CHARGE children. Her mom dedicated all of her time to Kennedy's therapy and it is certainly paying off!

Her mom, Lisa, also heads up the CHARGE online international support group. This group has been a true lifesaver for sooooooooooooo many of us parents. I seriously don't know what I would do without the advice, support, love and humor of my fellow CHARGE moms and dads.

Thank you Kennedy, Lisa and family for the amazing support and inspiration you give to the CHARGE community. We love you!

8 comments:

Mark and Jaye said...

What an inspiration Kennedy is!! WOW! With all that Max is doing now in just his first year, and with YOU by his side MIGHTY MOM! I have no doubts that Max will be just like Kennedy!
Jaye

Moriah (zandysmom) said...

Yep, Lisa & Kennedy are awesome!!! Kennedy was just a little older than Alex when he was born & her story was one that my SIL (who was reading the CHARGE stuff for me) would tell me about.


PS: Sorry I've been not commenting lately, I have been reading just lots going on with an extended stay from my Mom & SD. Alex is back in school now though so I have a little more time on the computer again :)

Dylan (and Kristy) said...

What a cutie!

Kristy, Ray, Dylan, and Jonah

Steph said...

Kennedy is such a cutie! Love the videos!

elle said...

yeah all us chargers love ehr i talk to her on msn soemtiems look fwd to the day when i can do that with max to LOL

Cedie L Mock said...

Stories like Kennedy's and the other older CHARGErs make it easier for us new CHARGE moms.

Jennifer

carolyn said...

Kennedy is a cutie.
A team like Mighty Max and Incredible Amy, I know Max will do well too.
Love & Prayers
Carolyn

Lisa W. said...

AW! Thanks for the write up, Amy. We were away (for appointments, of course!) - what a nice thing to come home to!!!